One Should Know About Celiac Disease

Although this is not written by a medical professional and this is not substitute for professional medical advice; it is still worthwhile to be aware of the existence Celiac Disease.

This is because many people have the disease and do not know it. And there are some people who have it who do not have any symptoms. It is important for celiacs to know that they have the disease, because they must start following a strict gluten-free diet. The earlier one is diagnosed, the better they will do.

Celiac disease affects 1 in 133 people in the United States.^[1] That is more than 2 million people.^[2] So celiac disease is not some rare disease.

For those who do have symptoms, it is still sometimes not caught. This is because celiac disease has such an extremely varied number of symptoms. Because it has symptoms that are common to many other conditions, it is sometimes misdiagnosed as something else (such as irritable bowel syndrome). Although irritable bowel can be one of the many possible symptoms of the disease. So is constipation. But diarrhea is also a symptom of celiac. Loss of appetite can be a symptom. But voracious appetite can also be a symptom. Other gastrointestinal symptoms of celiac includes bloating, gas, flatulence, foul-smelling stool, and abdominal pain.

Some people with celiac may not have gastrointestinal symptoms at all; instead they have other symptoms that can include anemia, fatigue, canker sores, vitamin K deficincy, and many other. It is better that you see the full list of symptoms on the Celiac Disease Foundation website. Those with celiac disease can experience weight loss, osteoporosis, depression, irritability, and infertility. And in some cases, it can lead to cancer.

Some people may have the disease and not have any symptoms at all. One study showed that 60% of diagnosed children and 41% of diagnosed adults do not have any symptoms.

As much as 95% to 97% of people with celiac disease go undiagnosed or mis-diagnosed.^[7][12] 10 years is the average time a person waits to be correctly diagnosed.^[12] Anywhere from 0.5% to 1% of populations in United States, Europe, South America, and Australia may have the undetected celiac disease.^[6]

Besides having varied symptoms, this disease also goes by various names. If you see the words "celiac", "coeliac", "sprue", or combinations of these, it also refers to this disease.^[5]

An example was cited in Huffingtonpost.com article written by Dr. Mark Hyman who mentioned a patient who had be taking 15 different different medications prescribed by various specialist for various conditions ranging from reflux, high blood pressure, to asthma -- all of which are indicative of inflammatory conditions. Dr. Hyman uncovered the real problem was that he had celiac disease. Once the root cause was found, it can be addressed. And the patient lost 25 pounds, and his other conditions back to normal, and he was off many of his medications.

Another article on Hubpages by Baileybear tells about her initially undiagnosed celiac disease and how changing to a gluten-free diet made a big difference. 

Celiac disease is an autoimmune disease that damages the small intestines so that one can not absorb nutrients readily from foods.

Gluten in food triggers the person with celiac to invoke an immune response on itself. This immune response damages the villi in the small intestines. The villi are small finger-like protrusions along the sides of the small intestine that are responsible for absorbing nutrients from foods.

Dr. Peter Green in his book Celiac Disease: A Hidden Epidemic defines it as ...

"a genetic, autoimmune condition that requires exposure to gluten to express itself.  It is both common and permanent, although the age of onset ranges from early childhood through late adulthood." [p76]

Celiac disease is one of the more common genetic conditions in the world and there is a hereditary component. Celiac disease occurs in 5% to 15% of the offspring and siblings of a person with celiac disease.^[1] So if you have a family member that has the disease, the Celiac Disease Foundation strongly suggest that you get tested even if you have no symptoms.  Dr. Green write in bold on page 185 ...

"Children and first-degree relatives of patients positively diagnosed with celiac disease should have blood tests for the condition whether or not they have symptoms."

A preliminary screening involves a panel of blood tests which may include ...

• IgA endomysial antibodies (EMA) - a highly specific marker for celiac disease
• IgA tissue transglutaminase antibodies (tTG) - a very specific and fairly sensitive marker for celiac disease
• IgG tissue transglutaminase - valuable in diagnosing celiac disease in patients with selective IgA deficiency
• Total IgA antibodies - will identify patients who are IgA deficient
• Deamidated gliadin peptides (DGP) - a new generation antigliadin antibody test that is similar in sensitivity and specificity to the tTG test.

(Source: from "Celiac Disease" by Peter Green page 44.)

Also see LabTestOnline.org for more specific information. But in order for the tests to give valid results, the person must be eating gluten at the time.

Patients with a positive antibody test would then go have a small bowel endoscopy and biopsy done to confirm the disease.  Dr. Green says "The intestinal biopsy is currently the gold standard for the diagnosis of celiac disease." [p49]  He feels that no blood test is 100% definitive. False negatives and false possible have occurred.  It is possible for you to still have celiac disease even with a negative blood test.  Or you can still develop it later in life.  And it is possible that a positive blood test (depending on the type of test) can be caused by another condition that is not celiac disease.

Sometimes both blood test and biopsy are inconclusive. Then genetic testing might be considered. There are certain genes that are associated with celiac disease -- only some (not all) of the genes associated celiac is known. Not having a certain gene combination can rule out the disease, because nearly all celiacs will have either the HLA DQ2 and/or the DQ8 gene. But having those genes for celiac does not mean you will get celiac disease. It just means that you have a genetic risk for it.

For a person with a family member that has the disease, there can be two ways to go. One way is to get the gene test and if one does not have DQ2 and does not have DQ8, then one will never get celiac. Another way is to run the antibody test. If it is negative, that means the person does not have celiac at the moment. However, they can still develop it anytime in their lives. So they may have to run the anti-body test every 2 to 3 years.

Obviously, this is complicated. So one should always consult a doctor for a proper diagnosis.

It is not known what causes or triggers the disease. But it is combination of genes and the environment. The environment in this case is gluten and wheat.

Take for example, identical twins -- they have exactly the same genes. In 70% of the time, both twins will have the disease. This indicates a strong genetic component. However, it also shows that it can happen that one twin can get the disease while the other twin does not (even though their genes are identical).

Celiac disease can develop anytime in life (from early childhood to late adult). Some say that sometimes it may be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy or childbirth.

As of currently (year 2010), the only treatment for celiac disease is a life-long diet restriction that avoids gluten, wheat, rye, barley, and triticale. Ideally, test for celiac disease first before going on the gluten-free diet, because the validity of both the blood and biopsy test is dependent on the ingesting of gluten at the time of the test.

Celiac disease is not a food allergy. It is an autoimmune disease. A person can grow out of food allergy. A person can not "grow out of" celiac disease; it is a life-long disease that can not be cured. Hence a life-long diet restriction needs to be adhered. But medication is not normally required.

What is gluten? Gluten is a general term for specific proteins in grains. These gluten proteins are found in all forms of wheat (including durum, semonlia, spelt, kamut, einkorn, and faro). It is found in grains such as rye, barley and triticate.

Gluten can be found in many breads, cereals, pasta, and processed foods.

People with celiac must read food labels carefully. Nevertheless, it is still hard to know when something contains gluten. Some vitamins, lipstick, and lip balm may also contain gluten (but not labeled as containing). So one may sometimes need to call the manufacture to find out.  Some non-gluten foods may be cross-contaminated with gluten because they were processed on the same machines as gluten foods.  Cross-contamination can also occur in restaurants and in homes.   Even small amounts of gluten can affect people with celiac disease. So working with a dietitian or physician who specializes in celiac would be helpful.

The National Digestive Disease Information Clearinghouse has a partial list of examples of allowed and disallowed foods in reference [2]. For example, rice, potatoes, buckwheat, and soy is okay. But some soy sauce may not be okay. Vegetables by itself is okay. But vegetables in sauce (such as in restaurants) may contain gluten. Many processed foods like french fries, chips, candy, hot dogs, sausages, and others can contain gluten and should be avoided. However, it might be possible to find some of the same in gluten-free varieties.^[2]

Because of their gluten-free diets and decrease absorption, people with celiac should consult with their doctors about taking vitamins and supplements (but make sure they are the ones without any gluten). And also monitor for osteoporosis.^[11]

For more information about celiac disease, watch YouTube video linked here. It is presented by UCSD's Medical Research Center for Celiac Disease. Dr. Martin Kagnoff talks about what is celiac disease. Dr. Gregory Harmon talks about testing for celiac. And Susan Algert, Ph.D., Nutritionist talks about gluten-free diet.

NOTES:

The video shows an upload date of 2007.

This article was written in July 2010. Information may be outdated since time of writing.